So pleased you have your husband moving around. I believe there are days when Stroke recoverers suffer from fatigue and they also tend to sleep a lot and so it may be that your husband may be fatigued? I have found with Mum that there are times when she does not want to do absolutely anything and just wants to sleep an dat other times she is buzzing and wants to do things. On the days when she wants to do things, sometimes it does not take long before she is tired and so we have to stop. We have learned to do try to do things at Mumās pace and at her timetables.
We made the mistake, though sometimes there is no choice e.g. due to personal commintments etc. of trying to do things for Mum on a timed schedule and it did not work very well. Having introduced flexibility it is much better for her, but that much harder for us since it now means there are times when we end up doing things for Mum when we might be doing things for ourselves. It is about getting the balance right. This is not easy for anyone and there will be winners and losers.
Thank you for the information about online PT - I was not aware of it and the PT who comes to help Mum did not mention it. He says there is a register (society of physiotherapists) form which you can find suitably qualified practitioners. I have not yet treid it but hope to do so soon.
Costs are definitely a challenge and I guess it again comes down to being able to afford it or if not being able to justify the spend. We have bought many gadgets or aids in the hope of helping Mumās condition to improve, but many have proved to be unsuitable and are gathering dust.
Hope your trip to Paces goes well and I am sure with your help your husbandās condition will continue to improve and the quality of both your lives will improve.
Thanks but he has decided not to continue going to physio as it involves travelling 36 miles and he is fearful of car travel and worse on any other form of transport even if he would dare try his wheelchair on trains and buses. So as heās had recent headaches again we didnāt go today. Might be the last one!
Hi Ann , I think possibly I am a bit different from lots of people improving from strokes. Maybe your hubby is similar? 2.5 years on . I have hardly at all managed, phsio. Poss class my FATIGUE as chronic. However for me best physio is at home, trying to do everyday things. As have been told, keep moving. Max car journey, passenger, 15 minutes . The idea of travelling, before physio, would be a NO. I remember hearing AEROBICS, was dreamt up ,to make money. Just to say, JUMPING UP & DOWN, couldnāt charge for it . . Yes I understand for most physio, so important, poss hubby is OK just moving if poss , without added pressure? ANY , ANXIETY, can be off the scale, very hard to explain. How old is your husband? Wishing you both well. David.
Hello David - yes Colin is very reluctant to travel. 5 minutes to GP takes 30 minutes prep to get him in and then out of the car at the other end. I did it this morning and have to go again tomorrow and again next week! blood test today, and urineā¦ BPā¦ then tomorrow regarding stroke symptoms recently of throbbing headaches [lack of a tablet that hadnāt been sent on time!] and again next week for diabetic check! heās 73 and not motivated to do anything re physio. So Iāve given up taking him now our particular staff member has moved on. he does not want to practice what she says - to stand on the molift for more than 30 seconds. He sits after 15 or less and thatās at his most active time in the morning! It is frustrating to me! So thanks for your sympathy and I trust your motivation is stronger. Keep going! Bless you!
Shwmae @AnneC, the reason physio is important is because it allows the brain to practice without the neurological energy required to actually perform the tasks in an active environment. I spent many months in bed, the only exercise I did was sitting on the side of the bed for an hour doing leg lifts, arm rotations et cetera. And then I stood up and did some Tai chi, and then some vestibular exercises, and then I got straight back into bed and slept for a few hours. Motivation is terribly difficult when stroke is not just one symptom but many all at once. A seemingly, never-ending barrage of painful and disconcerting sensations that would flummox any āfitā person. @David3 is spot on when he mentions doing everyday things, particularly in a familiar environment. Making a cup of tea, changing the bed linen, hoovering, showering &c. To be honest, hoovering got me moving more than anything else. It made my partner happy, and it made me happy. Chair exercises are also beneficial, but can I also say, that I spent a lot of time watching walking programmes like Take A Hike, Tony Robinsons Walking Through History et cetera. I became obsessed by walking programmes simply for the joy of watching other people do what I could not, but desired to do once again. Although, not intensely effective, it works in the same way that athletes mentally imagine what they are about to do, or musicians envisage their stage performance because it causes very subtle brain activity for the particular activity involved. I did lot of various physio including watching people walk, and I went from a shuffle (one year) to being able to walk a normal step, although my feet point outwards, and I walk a bit like a gunslinger now. David mentions anxiety, which has been one of my biggest issues, and still is, but I recommend CBT to ease the pangs of fear and whatnot that can be so debilitating on top of everything else.
I am pleased you have had the motivation to keep on exercising. Yes I know the benefits that physio should provide for neuroplasticity but convincing my husband of it after 6 years now since his first stroke and 3 since his 2nd major one has not been successful at all. I may be too lazy at making him but I donāt want to nag as he just gets upset. negative vibes donāt motivate. He wonāt attend any group for exercise nor watch a video though I have found a few that he could join in on. He seems happy to just sit. He may obsess a little on the cop shows, especially the real cops in traffic control and maybe that is to compensate for him not being able to drive a car for the past 6 years. He isnāt in any pain apart from an odd twinge on his wrist. He just isnāt motivated to try anything. I guess that is demotivating to me too. He wouldnāt even consider getting into his wheelchair to make his own coffee in the kitchen this morning. Itās too much stress to move it seems. Comfort zones! He has always had that problem of not wanting to extend himself, maybe for fear of failure but it has become a lifelong issue not just due to stroke. So I end up leaving him be. I have my own work to get on with. He canāt stand it. He will not try to let go of the mo-lift for more than 2 seconds that he stands on holding on, for grim life to sit again. Chair exercises? he might try for 5 minutes.
Good for you to persist in getting back to standing and even making a bed! Amazing! Well done.
@AnneC, if he is āhappyā and it isnāt putting too much of a strain on you, thereās not a lot that can be done, I would imagine. As we age, the body deteriorates and the mind still needs exercise even without adding a stroke injury to the mix. However, we all approach things differently, and after three strokes, I imagine six years is not a lot of time. I have a five year goal to try and reach some sort of homeostasis, but I fear this is going to be my Achilles heel for life. You need to have a fulfilling life too, so I understand that letting him be seems the only way forward. Before stroke, I couldnāt bear feeling aimless, have never liked not having something to do, I guess that has carried over post stroke, but sometimes the hwyl does get kicked out of me, and I go through lethargic patches where staring out a window and thinking is the most I want to do. Iām pleased to hear that he is watching telly though, that also stimulates the brain. It sounds like you have been as helpful as you can, anyone would appreciate it, but itās hard for carers too, and you need your own time, and your own rewards. I would suggest video games, but I suspect they may not be his cup of tea. there are some fun driving games. I donāt play them though, I play puzzle adventure games. It helps keep my mind ticking over and relaxes me.
Thanks for this. However, he cannot read or write due to the strokes and thus video games are out of the possibilities. I try occasionally to play dominos with him. He gives it a go for a short while. We have trionomos too but that tires him too fast. The nearest he gets to video games is 10 minutes on his speech therapy app! He tries to use audible books and gets them on amazon sometimes too many for his credits and that causes issues with us! He does not realise what he presses on his phone! He used to be my techie for all things computer but now cannot use one. He can barely make phone call. I have left basic contacts on or heād never find me! I think heās not going to improve. The specialist reckons he may have a continuous flow of TIAs and so we have just had him on an MRI yesterday. BUT even then they nearly cancelled it because he couldnāt walk from wheelchair to table! Two men frogmarched him onto it apparently. He coped!
Thanks for the answer. Iāll be busy the next 48 hours on my work of tutoring/ lecturing PhD students by zoom! Bye for now. Anne
He got used to Audible but we have borrow box now but he canāt seem to make the choices from it. It seems difficult to search on it. So I have to do it for him. He will only do one at a time but we can make it happen!! Thanks for the reminder.
Anne
. Yes I understand for most physio, so important, poss hubby is OK just moving if poss , without added pressure? ANY , ANXIETY, can be off the scale, very hard to explain. How old is your husband? Wishing you both well. David.